Harry’s story

Chestnut Tree House has been part of my life for more than 20 years, ever since my sons Harry and Jack were diagnosed with Duchenne Muscular Dystrophy (DMD). That was a nightmarish time: Harry was three and Jack was just four months old, so to find out he had the condition as well was a double blow.

Caption: Harry was “full of mischief” and “a total character.”

Harry died last year, at the age of 24. It was a sudden death, and it is a source of great sadness to me that he didn’t spend his last days at Chestnut. However, he did get to come back to the House afterwards. My whole family – me, Jack and my three daughters – spent two weeks with him in the bereavement suite, saying our goodbyes.

One in a million

Harry was very loud, full of mischief and a total character. I remember coming to Chestnut when he was little and finding him hiding in the curtains. He and Jack would climb into wardrobes – they could be quite naughty, but very funny. The staff would have to separate them to stop them causing chaos!

Harry was my first child, so I didn’t really know what to expect. When he still wasn’t sitting up at 10 months, I just thought it was because he was such a big boy. But when he started going to playschool, they told me he was different from the other children. He didn’t talk much or play with the other kids. As he got older, he wasn’t meeting his milestones – he didn’t walk until he was 23 months – and eventually we had an appointment at the hospital. At one point the doctor said, “Can I look at his legs?” That’s when I started panicking. Later, when she called me and said she couldn’t give the results over the phone, I knew it was very serious. She told me that he had DMD and wouldn’t live past 21. At that point, my life changed forever.

Jack was just a tiny baby, and we found out two weeks later that he had the condition as well. The stress and grief of the situation was so intense that I lost all my hair.

Such a happy boy

Harry had a wicked sense of humour. He was very loving, but he liked to tease people too. He enjoyed video games, PlayStation, music, drawing, and going to the cinema – especially watching Marvel films. I like to think that everywhere he went, he left a mark. He used to say that he wanted to have eight children, and I would reply that he wasn’t allowed, because I couldn’t afford presents for so many grandchildren. We had that sort of relationship – lots of love, lots of banter. It breaks my heart that he never got to experience the joy of finding a partner or holding his own child.

When they were first referred to Chestnut, Harry was three and Jack was a tiny baby, so it was a while before I felt ready for them to stay overnight. At first, Harry cried and didn’t want to be left but very soon they loved their visits. The boys both loved swimming in the pool and spending time in the sensory room.

For a few years, life was busy but happy: it was all about enjoying the kids. I just wanted to fill their lives with experiences for as long as possible. We had lots of holidays – to America, Gran Canaria, Paris and Lapland. Travelling was always hard work, but as the boys got older and needed wheelchairs and other equipment, it became impossible.

When things started changing

When Harry was around seven, a consultant at Great Ormond Street told us that he had a severe form of DMD. It is a degenerative condition and sadly the progression for him was quite rapid. Harry didn’t walk for long – children with DMD have a distinctive, waddling gait and can be quite wobbly on their feet. Harry had a walking frame, but he was always falling over. We got his first wheelchair when he was about seven, but he wasn’t in it full-time. Then one day he fell out the back door and onto his head and I told him it was time to stop walking outside.

I also have three daughters – 17-year-old twins and a ten-year-old. They all loved staying at Chestnut too. As the girls got older, the boys came to stay more often on their own, although we all continued to attend events at the House.

When Harry got older, he wanted a bit more independence and to live a more adult life. He went to a care home in Worthing – we live in Crawley – and I continued to visit several times a week.

When he died, he had been deteriorating for some time and was less and less able to do the things he enjoyed. He loved his food and one of the saddest things about the condition’s progression was when he lost the ability to eat.

He was still coming to Chestnut and he enjoyed the times he had at the House, watching films or being in the gardens.

Coming home to Chestnut

When he died, it came as a huge shock to me. I took the call, and I just screamed. I knew I wanted him to come to Chestnut afterwards, and when we got to the House all the staff stood outside the door like a guard of honour. He had been part of Chestnut almost since it opened, so of course they were sad too. We – me, my girls, and Jack – were here for two weeks. I don’t remember much about that time, but I was with Harry in his room a lot, playing him music.

Despite everything, Harry was a very fun person, and that’s how I like to remember him. He was hilarious. When he came to Chestnut, he liked to have a bit of time on his own watching DVDs. He liked banging and crashing in the music room and playing with Play-Doh. He was an outrageous flirt, and he was cheeky with it. He was also a hoarder who loved toys and collectables.

It is hard to understand how someone with such a big personality can just disappear. As he got older, he became my best friend. He was very chilled and such a beautiful personality. He was a lovely man, and I miss him so much.